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Avis
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Posted: Thu Jan 1st, 2009 03:32 |
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Our son has been sick for 6 years and is 19. We recently came to understand that he has had lyme and bartonella. He was also exposed to 14 years of mold. His symptoms include depression, agitation, extreme fatigue, inability to fall asleep, bad herx with any natural antibiotic designed for gut bacteria. Three years ago his d tests were as follows:
vitamin d 1,25 dihydroxy = 73.7, range was 15.9-55.6
vitamin d, 25 hydroxy = 31.4, range was 9-41
We believe that he might be a candidate for the Marshall Protocol. This is all pretty new to us but makes more sense than just hitting him with high dose antibiotics. Can you tell us what you think about his test results and should we retest him now before beginning the protocol?
Thank you.
Avis
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Avis hypothyroid, lifelong malabsorption, food allergy, immunosuppression, heavy metals, adhesions, 14 year mold exposure 1/09 25D=35, 1,25D=42. 4/26/09 Phase I. Low D diet, sun avoidance, natural biest/progesterone, Westhroid, daily B12 injections.
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Avis
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Posted: Fri Jan 16th, 2009 03:37 |
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Hello,
I am trying to start my own thread. I will start the MP soon and my son started the MP on 1/11. (babesia, bartonella, ehrlichia) He's trying to figure out a schedule since he's a college kid sleeping in a room with 3 other guys. Is 7 AM, 12:30PM, 6PM and 11:30PM OK?
He seems to be herxing with Benicar alone but doesn't feel sure or safe in taking the extra Benicar. His doctor did not offer it so I asked and he was prescribed 20 mg tablets. Is it OK to take an extra 20 mg. whenever the herxing feels bad? Is he to take it with water, or chewed and swallowed or sucked under the tongue? He's trying to figure out a limit on how many extras he can take in a day.
Thank you
Avis
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Avis hypothyroid, lifelong malabsorption, food allergy, immunosuppression, heavy metals, adhesions, 14 year mold exposure 1/09 25D=35, 1,25D=42. 4/26/09 Phase I. Low D diet, sun avoidance, natural biest/progesterone, Westhroid, daily B12 injections.
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JoshR
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Posted: Fri Jan 16th, 2009 09:18 |
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| Please see When to tighten the blockade.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Avis
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Posted: Fri Jan 16th, 2009 15:32 |
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JoshR
Thank you so much. My son's leaving tomorrow but last night said he wanted something to read about the Benicar--not the science of the MP--but how to use the Benicar. I looked but got lost. This is perfect. I appreciate it.
Avis
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Avis hypothyroid, lifelong malabsorption, food allergy, immunosuppression, heavy metals, adhesions, 14 year mold exposure 1/09 25D=35, 1,25D=42. 4/26/09 Phase I. Low D diet, sun avoidance, natural biest/progesterone, Westhroid, daily B12 injections.
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Joyful
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Posted: Sat Jan 17th, 2009 03:11 |
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Hi Avis. 
There is a fairly complete page in the new MP knowledge base on Dosing and administration of olmesartan (Benicar) that should clear up any questions you have about this topic.
Hope that helps!
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Search the MP Knowledge Base __ Be Kind, We Are All Fragile
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Avis
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Posted: Sat Jan 17th, 2009 06:14 |
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Hi Joyful,
That information is great--just what we needed. Your link seems to be connected to what JoshR sent the link for so I printed it out and my son has started reading it. He seems to have gotten the Benicar to work well today and It makes him feel so much better.
Plus, I think I flunked my d-metabolite test, (not sure so I'll post,) so I hope to be starting soon myself.
Many thanks. I'm excited and so relieved to have found a vital piece of the puzzle for my family.
Avis
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Avis hypothyroid, lifelong malabsorption, food allergy, immunosuppression, heavy metals, adhesions, 14 year mold exposure 1/09 25D=35, 1,25D=42. 4/26/09 Phase I. Low D diet, sun avoidance, natural biest/progesterone, Westhroid, daily B12 injections.
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Joyful
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Posted: Sat Jan 17th, 2009 07:16 |
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Yes, it's really amazing the hope that comes when one begins to realize the MP has an answer beyond simply 'coping' with disease.
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Search the MP Knowledge Base __ Be Kind, We Are All Fragile
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Avis
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Posted: Wed Jan 21st, 2009 02:22 |
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Hello,
My son called from college, 3000 miles away, and is very scared, he's had a fever, sweating, chills, runny nose, sore throat and feels worse than he's ever felt in his life for the past 30 hours. He thinks he broke the Benicar blockade somewhere in this.
He started Benicar 10 days ago and is taking 40 mg every six hours. He started feeling sick after an indoor basketball game. He has bartonella, babesia, ehrlichia, none of which have ever been treated before.
We can't tell if this is the flu, if this is his innate immunity kicking in and starting to kill the bacteria and parasite. We wonder if he should take the antibiotics that the LLMD suggested while he does this semester and then start the MP when he's here and we can help him.
He took advil and more benicar and will take it more frequently tonight.
I'm scared, too, now. He's saying he doesn't think he can do this at college and is already missing classes in his second semester and is thinking of taking himself to the infirmary tomorrow am.
Please, any advice would be appreciated. Thank you.
Avis
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Avis hypothyroid, lifelong malabsorption, food allergy, immunosuppression, heavy metals, adhesions, 14 year mold exposure 1/09 25D=35, 1,25D=42. 4/26/09 Phase I. Low D diet, sun avoidance, natural biest/progesterone, Westhroid, daily B12 injections.
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Dr Trevor Marshall
Foundation Staff
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Posted: Wed Jan 21st, 2009 07:50 |
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Our Emergency room guidance is at:
http://AutoimmunityResearch.org/ER.pdf
It is almost impossible to succeed with the MP on your own, without a close family or support infrastructure. As much as you love your son, I suspect he is sufficiently ill that he will not be able to recover his health and live 'a normal life' at the same time.
People who are healthy suffer no Immunopathology from taking Benicar -- none at all. It is regarded by the FDA as one of the safest drugs in the US formulary.
So, armed with the information that your son has come out positive during a "therapeutic probe", your Doc can now re-evaluate your son, and help the family figure out what to do.
If Doc calls or writes me, I can give him/her some ideas about how to wean your son off the Benicar,
Sincerely
Trevor
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Avis
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Posted: Wed Jan 21st, 2009 14:06 |
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Dear Dr. Marshall,
Thank for the the emergency link info and your response. This was not a therapeutic probe. My son's d25 was 34.4 and d 1,25 was 73.7 in 2005. His MP doctor, who has worked with other patients with this protocol, and has spoken to you before, said he didn't need to retest him now but he should start the protocol and he would then retest him as he went along. His other doctor --environmental/mold guy--fully supports the MP for our son, as well. No one wants the standard lyme/bartonella/ehrlichia/babesia approach, which we've never tried.
Our son responded so well to the Benicar and felt so much better on it that he was excited and wanting to continue. He had 8 days on it before he flew back to school. I contacted an MP veteran who helped us last night. I had Michael take his Benicar more frequently. He realizes he broke the benicar blockade. He had, instead, tried to sleep the "flu" off, vs conceptualizing it as IP. I told him this was IP, that he did the exact wrong thing, that he needed to text/call me 30 hours sooner, then I read him the section about exercise. He said that that made sense (He did not have time to do athletics here while on the Benicar) because he felt sick right after the exercise. I said I'd try to figure it out but it seemed that he would have to up his Benicar if he played sports ( and be careful about how strenuous) because of the increased tissue perfusion and greater immune response. He felt much better by midnight, though he's planning to skip classes today, but is on an increased benicar dosing schedule overnight.
At this point we plan to go very slowly with Benicar (and no mino for a while) and regular college life until he's very stable and knows how he responds in various situations. We have a conference call with his doctor next week. I would like you to reconsider. He actually has a lot of support with two doctors, your site and me, given that he's been working on his health and other protocols with me for a long time and is onboard himself and is sick no matter what, so at least this being sick has a purpose. However, if you are saying that this sort of response cannot be controlled, even if he uses the Benicar more appropriately, then it is a different story. I am eager to hear what you think. Thank you again for your prompt reply
Avis
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Avis hypothyroid, lifelong malabsorption, food allergy, immunosuppression, heavy metals, adhesions, 14 year mold exposure 1/09 25D=35, 1,25D=42. 4/26/09 Phase I. Low D diet, sun avoidance, natural biest/progesterone, Westhroid, daily B12 injections.
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JoshR
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Posted: Wed Jan 21st, 2009 17:01 |
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I don't believe Dr Marshall was recommending that your son stop Benicar, but simply offering help in doing so if you should choose that course of action.
Strange as it may seem, some people do choose to stop the MP when it becomes clear that they must choose between healing and living a 'normal' lifestyle.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Dr Trevor Marshall
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Posted: Wed Jan 21st, 2009 18:32 |
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Avis,
As long as he is on Benicar his own immune system should stop him from getting significantly more ill until he feels comfortable to spend the time to really kill the bugs off
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Avis
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Posted: Wed Jan 21st, 2009 19:04 |
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Josh,
Thank you. You can hear the panic in me. Afraid somehow that it will be advised that he not do what we believe will be his only way to health. I got your clarification.
Dr. Marshall,
YES! I was wondering about that. Sounds like even a minimal approach--no D and Benicar--will help him not get worse and allow his immune system to function better even if it's the entire semester, if he's afraid of mino at school. But then maybe we could start mino over his 2-week Spring break and keep low level bacteriostatic on board. And in summer continue with mino and/or zith etc. I feel like you're opening a viable way of thinking about this and approaching treatment that takes into account his lifestyle, age and distance from us. I saw your happy face, so I'm taking this as encouragement. Thank you very much.
Avis
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Avis hypothyroid, lifelong malabsorption, food allergy, immunosuppression, heavy metals, adhesions, 14 year mold exposure 1/09 25D=35, 1,25D=42. 4/26/09 Phase I. Low D diet, sun avoidance, natural biest/progesterone, Westhroid, daily B12 injections.
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Katherine
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Posted: Thu Jan 22nd, 2009 03:48 |
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Avis,
I've been following your story, as it is very similar to my son's. who is also 19 and was bit by a deer tick in 2007.
Could you share what his symptoms were? I know you mentioned rage, I noticed this too happening with my son when he was not dx after being bit. He's also experiencing lethargy and sleeping problems.
His Doctor put him on Doxy for two weeks and another antibiotic for another two weeks six months after the bite. He has problems with his knees when he tries to do sports and he's had some unusual things happen with his muscles (spasms and inflammation).
Keep posting. Your a great support system for your son, and it's wonderful that he is being so proactive with his health problems.
katherine
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FM, Lyme, Insomnia, IBS, RLS, PLMD, OA, Asthma 10/30/08 1-25D74, 25D34, 12/17/08 - 25D39. 2/5/09-25D31. 3/4/09-25D18. 4/8/09 - 25D24, PH1-11/21/08. PH2- 2/6/09, 15mg Armour, Estradiol 1mg, NoIRs, low lux, covered
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Avis
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Posted: Thu Jan 22nd, 2009 13:36 |
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Hi Katherine,
We assume that Michael was bit the summer of 2002. His symptoms included what he would describe as suicidal depression, severe agitation, anxiety, severe insomnia, fatigue. His situation was complicated by a 14 year exposure to mold which had already taxed his immune system, liver and detox symptoms and manifested as chronic sinusitis. He does not exhibit rage but I believe that is only because he was always very calm and mild and pretty good in his own skin prior to the bite. Rage is, however, a very common symptom of Bartonella, as are most of the above neurological symptoms. .
The bacteria seem to degrade and break down his serotonin and dopamine which we've documented in lab tests and which we treat with amino acids in order to maintain some amount of stability and functioning for him, until the bacteria are killed.
At this point, we're positive about the Bart, ehrichia and babesia, but can't quite get a complete positive on Lyme (second testing, followed by third even more specialized test). I will take lyme off of my signature if the 3rd comes back negative, though doctors seem to disagree on if the co-infections can occur without lyme. This may just be repeat false negatives but it may be that he does not have lyme which accounts for his lack of joint problems and history of varsity athletics.
I suppose there are many more of our 19 year olds suffering out there than I knew. My goal is to spare our sons a lifetime of all of these health problems we've had. I hope that reading about bartonella sheds more light on your situation. Good luck.
Avis
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Avis hypothyroid, lifelong malabsorption, food allergy, immunosuppression, heavy metals, adhesions, 14 year mold exposure 1/09 25D=35, 1,25D=42. 4/26/09 Phase I. Low D diet, sun avoidance, natural biest/progesterone, Westhroid, daily B12 injections.
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Katherine
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Posted: Fri Jan 23rd, 2009 00:37 |
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Avis,
How is Michael doing?
thanks for the information. Kyle seems to do well on the free form amino acids also, it helps keep him on an even keel throughout the day. We've tried a few of the drugs for insomnia and fatigue but he has a hard time with side effects and they don't help.
I'm trying to get him to think about the MP but he's a little reticent about the light restriction. He has also lost his health insurance as he is not enrolled in school full time due to these symptoms.
BTW - I had somewhat of a similar reaction as Michael's after being on the Benicar for a few weeks.
I flew out to Calif for a family reunion. When I returned home I got very sick and ended up in the ER with SOB and chest pain. I believe I caught a virus and coupled with the IP and intense light exposure from the plane flight it really threw me for a while.
My MP doctor wanted me to start on Mino 100 mg twice a day (he offered no advice on how to do this while on the MP). I continued on the MP with the graduated mino and coughed up junk from my lungs for a month and half afterwards, (now only occasionally).
The first two months on the MP were an adjustment, perhaps the best way to approach it is to be prepared for anything, and the benicar blockade is key. BUT improvements are already happening! My dizziness and palpitations are gone (definitely IP) and the insomnia (sleepless nights) are getting better (slowly). My energy is better. The autonomic symptoms that have plagued me for years are much better. I am off the armour thyroid and 17 beta estradiol that I was taking. My reading ability has improved (couldn't read at all in the beginning of the MP) still a challenge though and this is tough cause I enjoy reading. I can take deep breaths! My hair has stopped falling out. My muscles were weak in the beginning and just this past week feel stronger.
Some things are worst depending on the day of Mino dosing and what exercise I have done, I have jaw and teeth pain here and there, patches of itchy skin, severe chills quite a lot (always asking if anyone else is cold answer is usually no). I having muscles spasms in my right foot and neck.
If I don't wear my glasses for more than a few minutes I notice neuro symptoms almost immediately (which usually is a startle reflex, slight headache, fatigue, inability to concentrate and increased irritability for me). It's a learning curve.
Sorry for the long post, I thought I would incorporate my 2 month update here also for anyone else interested. hopefully there is some info here for you and your son.
best wishes to you and Michael
Katherine
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FM, Lyme, Insomnia, IBS, RLS, PLMD, OA, Asthma 10/30/08 1-25D74, 25D34, 12/17/08 - 25D39. 2/5/09-25D31. 3/4/09-25D18. 4/8/09 - 25D24, PH1-11/21/08. PH2- 2/6/09, 15mg Armour, Estradiol 1mg, NoIRs, low lux, covered
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Avis
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Posted: Fri Jan 23rd, 2009 03:29 |
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Hi Katherine,
Wow. That's quite a lot of improvement for only 2 months. I glad for you. Your description of your symptoms was provocative. Michael doesn't do that much indoor light restriction as he's not photosensitive and is in a dark, snowy place right now and not outdoors. His MP doc said it was all individually determined--not all were photosensitive-- and he'd have to figure it out. I don't quite understand what the lights in the gym during the basketball game might have done to him and the Benicar blockade, so will have to reread all of that.
He is recovering. Went back to class. Not feeling great. Trying to get the Benicar dosing back to 6 hours from more frequent. Unfortunately, in the middle of all of this it became clear that he's not getting that sushi is off limits. He did say, though, he'd avoid the tuna and seaweed in his California roll.
I see the MP doc tomorrow for me. Hope I can get results, too. Thank you for the info. Again, am amazed at how much symptom relief you've already had, though it sounds like you've paid some price for that.
I get it with Kyle. It's hard. Michael's only doing it because he feels desperate and has tried so many things that haven't worked for years and I pleaded and he conceded but then his reaction to the Benicar was very reinforcing and apparent early on. Kyle may get there yet.
Avis
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Avis hypothyroid, lifelong malabsorption, food allergy, immunosuppression, heavy metals, adhesions, 14 year mold exposure 1/09 25D=35, 1,25D=42. 4/26/09 Phase I. Low D diet, sun avoidance, natural biest/progesterone, Westhroid, daily B12 injections.
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Jan 23rd, 2009 11:54 |
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You will find that the Borrelia, Bartonella, Ehrichia and Babesia are all co-infections, present only because his immune system has been too weakened by the Th1 pathogens to kill them off.
Medicine has failed to understand chronic disease, because it focuses too much on things that seem simple enough, like identifiable pathogens, instead of studying interacting genomes, and the complex processes that actually cause the disease
Forget about the (recent) co-infections, and focus on the the Th1 microbiota, which has been gradually accumulating since conception. Only by working that microbiota down can you reverse the chronic disease processes.
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Avis
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Posted: Fri Jan 23rd, 2009 15:02 |
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Dr. Marshall,
Well, that takes my thinking one step further. Should have gotten there before--based on what you've written--but now I hope that I really get it.
Seems like the original infections were l-form bacteria transmitted in egg and sperm, by intrauterine/placental transmission and later from environmental and communicable sources within the family. So that those things that are identified in the lab now reflect what's been accumulated more recently. That would mean that my literally lifetime illness (from 7 days after birth) reflects an early "load" received from my parents, which I passed on to my son. His health then got worse when his immune suppression rendered him unable to kill off his lyme/bart/ehrlic/bab infections which just joined the party.
Our mold doctor said that he believes that as we kill the l-form pathogens and biofilm the danger from the mold (stachybotrus + 3 others) will go away--he was 80% sure at this point-- because it won't be trapped in the biofilm. I hope that I've got this right. It continues to make me feel very hopeful.
Thank you very much.
Avis
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Avis hypothyroid, lifelong malabsorption, food allergy, immunosuppression, heavy metals, adhesions, 14 year mold exposure 1/09 25D=35, 1,25D=42. 4/26/09 Phase I. Low D diet, sun avoidance, natural biest/progesterone, Westhroid, daily B12 injections.
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Avis
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Posted: Sat Feb 14th, 2009 03:31 |
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My son went back for second semester having just started Benicar, 10 days before, on Jan 10. He left feeling better on benicar but a few days after the 13 hour flying day, came down with very severe "flu." His doctor said he though it was a strong immune response to flu virus. Dr. Marshall suggested that he might not be able to do the program so far from home. He fought that and continued.
He recovered and now, less than 2 weeks later, he's sick again with a sore throat and feeling very sick. He now just wants stability. He never even got to minocyclin. He's thinking of stopping the protocol for now. I read that he can stop the Benicar cold turkey. However, will the Benicar's anti-inflammatory effects help him recover from this cold?
He's never done any antibiotic treatment for Lyme, Bartonella, Babesia and Ehrlichia. I don't know what to do next until summer. He needs more stability but I'm afraid of these growing infections. He can stay off of D. I hoped that staying on Benicar alone, as was suggested, would keep him safer all semester and would keep the infections from growing, but he picks up all these bugs and his immune response lays him flat. Can anyone make any suggestions please?
Avis
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Avis hypothyroid, lifelong malabsorption, food allergy, immunosuppression, heavy metals, adhesions, 14 year mold exposure 1/09 25D=35, 1,25D=42. 4/26/09 Phase I. Low D diet, sun avoidance, natural biest/progesterone, Westhroid, daily B12 injections.
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